Feeling stuck...don't know when to start meds

[annae00]

Please help, just looking for some guidance or some advice from people who understand

I got diagnosed with VM or PPPD about a month ago (after dealing with the feelings for about a year) nd my doctor told me to read “Head Your Headache The 123 Program” which outlines the migraine diet. I’ve been following the migraine diet since then, however, I have not felt ANY relief and to be honest sometimes feel as if I have more headaches. To be fair I have cheated a bit with the diet but have done the best I can do considering I’m a college student and eat at a dining hall. I am now starting to cut out even more foods that I would sometimes indulge in and see how I feel for two weeks or so. I’m just not feeling really good right now. I’m dizzy, getting a lot of tension headaches that aren’t really relieved from Advil/Tylenol. I’m also at the point right now of all this where I feel as if I’m slipping into a depression. There’s a lot of positive things in my life, yet this condition causes me to feel sad A LOT and I cry almost every day. I no longer look forward to things as much as I used to because this dizzy and pressure feeling is ALWAYS on my mind and I just can’t get it out of my mind it’s becoming this thing that I feel like I’m just constantly rotating around. I’m also really really anxious and feel more neurotic than I used to feel. My doctor told me to try the diet and reduce triggers and then if I don’t feel better at the end of January then to go on medication. I understand this method, however I’m at a point right now where I feel like I need to go on some sort of med in conjunction with the diet. I’m just too frustrated and I just need something. I’m so worried though that he’ll say it hasn’t been long enough of trying the diet.

The other thing is that I’m not sure if I have PPPD or VM or both (I know they are both intertwined in a lot of ways), but my doctor says that I medicate them differently and that I should be the one to choose which route to take BUT I HAVE NO IDEA. I can either go on like ami for migraine or SSRI for VM. He said that SNRI like Effexor can treat both. Are there more drugs that overlap, because I simply can’t make the decision between the two its impossible. Sometimes I feel like I need headache relief other times I feel like I need anxiety relief and sometimes I feel like I need both. I’m just so extremely confused and frustrated right now that my mind feels like its going a million miles per minute.

[sfnative]

I’m no expert on meds so can’t help you there. Instead I’ll talk to you as I would talk to one of my precious daughters.

Honey, get yourself to the student health center, tell them you’re struggling with anxiety and depression, and make an appointment with a counselor ASAP. What you are experiencing is extremely difficult for the even the most world-weary adults, and it’s got to be ridiculously overwhelming for a young college student. Having someone to help guide you on this journey could make all the difference. Do it!

Once you’ve made that phone call, make an appointment with your doctor and tell him, too, that you are struggling with anxiety and depression, that you are worried about your mental health. Most doctors understand the risks associated with untreated depression and respond accordingly.

If you’ve been reading the posts on this website you are beginning to understand that the path forward includes a lot of trial and error. This is not something you should try to do on your own. There is no shame in asking for help, and it sounds like you really need some help right now. Please make these two phone calls first thing Monday morning and get those appointments booked. Be a little assertive (cry if you have to) so you don’t have to wait too long.

You’re going to get through this, honey. We’re all pulling for you.

[Onandon03]

Hi and sorry to hear your troubles. I agree with @sfnative who’s over your side if The Pond but would just add a couple of comments and suggest a but more reading. With the reading start with Page 19 and note references to ‘no painkillers’. Then dip in as preferred.
https://www.thewaltoncentre.nhs.uk/uploadedfiles/leaflets/Migraine%20-%20A%20Comprehensive%20Guide.pdf

When it comes to medication I am not a doctor but from all I’ve read over the years I think Amitriptyline might be the best place to start fir many reasons I’ll not bother to list here. Drugs are all case if trial n error but that’s good starting block.

@annae00

The other thing is that I’m not sure if I have PPPD or VM or both (I know they are both intertwined in a lot of ways), but my doctor says that I medicate them differently and that I should be the one to choose which route to take BUT I HAVE NO IDEA.

I really find this makes my blood boil. This doctor, whoever he is, is complete and utter rubbish. Sorry? Why do doctors receive all their long and expensive years of training. It’s supposed to lead to them being able to can give patients a diagnosis and advise appropriate treatment from an informed basis. Not so they can invite you to self diagnose. If he cannot establish your condition he needs to refer you in to a specialist (neurologist/neuro-otologist) who can. Suggest you also ask for a referral on Monday. I could suggest other drugs and/or attach flowcharts relating to same but in your current (and natural) state of anxiety I wouldn’t bother you with them. See a specialist and let them offer you an informed choice. If that’s totally impossible for any reason try Ami. But as @sfnative so rightly says you really do need some proper professional guidance. And now. Good luck. Helen

[MissMigraine]

Anxiety anddepression go hand in hand with VM because the chemicals in the brain become imbalanced, so it’s no surprise you’re feeling that way. It can be just as difficult to deal with as the dizziness. With regards the diet, 3 months is usually the trial period according to the Heal Your Headache book. I tried it for longer than 6 months and it did absolutely nothing. Most consultants in the UK don’t bother with diet recommendations, they treat straight away with meds. Your doctor seems to have done a lousy job of explaining themselves, it shouldn’t be down to you to make decisions without being informed adequately, which you haven’t been. If they aren’t sure if your diagnosis is VM or PPPDthen it’s not up to you to make the choice, you should be referred to a neurologist or vestibular consultant. You might want to ask for a referral so you can truly get to the bottom of what’s wrong and then how to deal with it.

[Mav]

Hi Annae
See my reply below to another poster who recently had a similar question. Also check out Dr Timothy Hain’s website - he is a leading neuro in the US and look for his flowchart, it will help you get your head around where to start and what to do next if the first med you try doesn’t work. I had both daily dizziness and headache - Effexor is brilliant for me for the dizziness and while it didn’t completely kill off the headache it did reduce it significantly, i recently added in a beta blocker Half Beta Prograne 80mg extended release and this is further reducing the headache. See the post below -

“Sorry to hear that you are a fellow sufferer but you are in good company here - you will get lots of support and plenty of good advice from the gang on here. If you read through the “wiki” section on the forum you will see that there are so many symptoms associated with the condition we all have and you will also prob know that many of us get different “names” put on our condition - be it MAV, PPPD, vestibular dysfunction, migraine variant etc however the important thing is irrespective of the NAME that’s given to your condition it is the same pool of drugs that are used to treat it. There is an excellent webpage you should look at by a Dr. Timothy Hain the top neuro in the US who is well respected for his success in treating the symptoms we have. He has a flowchart of meds for treating the symptoms and the sequence in which they can be tried.

Essentially the pool of drugs that people have success with is as follows:
Beta Blockers: eg half beta prograne extended release - these would be classed as a first line med to try. Allegedly these drugs work by smoothing blood vessels in the brain, they also help anxiety

Tricyclics Antidepressants: 2nd line meds such as Amitriptyline up to 30mg or Nortriptyline
SNRI: also classed as 2nd line meds eg Venlafaxine/Effexor extended release - highly recommended by Tim Hain for those of us that are dizzy - starting dose 37.5mg up to 225mg max dose. Wonderful for anxiety too, I am the calmest I have ever been in my 49 yrs
The drugs in these two buckets allegedly target serotonin levels in the brain

Then there are other classes of meds if the two above don’t work
Calcium channel blockers: Flunarizine or Verapamil
BP meds: Candesartan and some others I can’t think of
Anticonvulsants: Topamax - many find side effects intolerable, Gabapentin - awful drug for me, Sodium Valproate - equally awful

In my case I was treated by my GP and ENT for 3 months for supposed Vestibular Neuritis too - my symptoms were extreme and constant dizziness, ear pressure and head and face pressure. The dizziness was not a spinning dizziness it was more like a constant drunken imbalance and unsteadiness on my feet. I subsequently saw an audiologist, my VNG and caloric testing were all clear so she diagnosed PPPD. Six months later I was told by my neuro that In fact i have MAV, I was 46 at onset with no prior history and as time has gone on I know for sure it’s hormone driven. What I have come to understand is that the migraine plays havoc with the vestibular system so you have a ton of symptoms that you think are separate individual ailments but are actually all related. Believe me I almost lost my mind “trying to get to the bottom of it” - I saw an ENT, Endocrinologist, Rheumatologist, Audiologist, 3 x Neurologists, Otolaryngologist, Gynaecologist , Vestibular Rehabilitation Specialist and no doubt others along the way that I have forgotten about. I have only recently begun to get my symptoms under control after 3yrs of pure hell. In March I started on 37.5mg Venlafaxine extended release and am now at 150mg - this has been a total game changer in drastically reducing the constant dizziness and ear pressure and the anxiety is gone. Just 2 weeks ago my neuro added in 80mg extended release Half Beta Prograne to try to kill off the head and face pressure that’s still there and I am seeing further improvement. At my period I end up bad again with escalating dizziness and head pressure and so she has prescribed Frovatriptan for me to take to try to abort the migraine activity - supposedly Frova constricts the blood vessels in the brain which are causing the pain. So my current med regime is a beta blocker and an SNRI and then abortive meds at my period.

Many folks on here have had great success with Amitriptyline and I am sure they will chime in with their advice to help you through this.
There is light at the end of the tunnel, the challenge is to find a med or combo of meds that will get you symptom free. Some people are very lucky in that the first drug they try gets them to symptom free, Ami has a good track record for what we have so you are starting with a well tried one.
Hope this helps
Mav”

[Allyson]

Hi.

I completely understand how you feel and share many of the symptoms and anxieties that you outline. I was diagnosed with a combination of VM and PPPD a few weeks ago following an inner ear infection last November. The infection eventually went but not the 24/7 dizziness. Added to this is head pressure, tinnitus and numerous sporadic bouts of vertigo, particularly whilst out in busy places or watching TV, reading etc. It causes me extreme fear and panic attacks almost daily.

I had almost lost all hope and then I found everyone here and realised we are all on a journey together and there is so much support on offer. I’m still new to the forum but all the comments I’ve received have been encouraging, informative and reassuring. It’s a good place to be!

I believe the majority of my symptoms have come about due to my age and fluctuations in hormone levels. I was also very stressed dealing with the loss of my dad and other family traumas and not looking after myself. So now I’m trying to rest where possible, watch what I eat and drink and keep stress and anxiety to as manageable levels as I can but that’s definitely not easy! I’m also trialling Amitriptyline 10mg and raising this to 20mg slowly. I seem to be tolerating it ok at the moment but I appreciate that what works for some may not work for others. Definitely a bit trial and effort but hopefully you will find something that works for you.

Hang on in there because you are stronger than you know!

Allyson x

[Renee]

Hi @annae00

I feel your pain with the anxiety and depression stemming from this awful disorder. I’ve been on the crying boat myself lately since I seem to be getting worse and no one around me seems to understand. I can empathize.

As for your doctor and the meds, what my neurologist did was go through each available medication by type. The preventatives and the aborting medications. We discussed how they worked and each of their side effects. The choice was ultimately up to me, but I felt I had sufficient knowledge.

I went with Sumatriptan or Imitrex as the one I really wanted was ridiculous in price. I chose this one because it’s an aborting medication, so take at first sign of migraine to stop it. One follow up pill if necessary. You only get maybe 9 or 10 pills a month so you’re limited.

Now the problem with my migraines, they seem to be changing and I can’t figure out what my first sign is right now. I used to have just throbbing pain and sound sensitivity. Now it’s a whole host of symptoms I’ve never had before.

When I go back to my neurologist, I will mention that I can no longer “catch” my onset in time to actually take that specific medication and I may turn to preventative medication. I’m already taking daily pills, what’s one more?

My suggestion to you is if your doctor is not willing to discuss treatment properly or go in-depth about the medications as mine has, I would find another doctor ASAP. I look for doctors who I can have a conversation with. I want them to ask me more than yes or no questions. I don’t want them to ask leading questions that will make me answer in a certain way.

I hope you get your answers and find relief.